On Dating and Finding Love as a Woman Living With HIV

Falling in love when you have HIV is terrain that can be very hard to map. Whether it's with our family or in a romantic relationship, love is a central motivator in so many of our lives, and Andrea de Lange's journey of love is a lesson for us all.

Andrea has come a long way since her initial diagnosis. She has repaired several family relationships through education, and turned down an appearance on Oprah. After dealing with several partners, including a former husband, who never made her feel quite right regarding her HIV status, she met and fell in love all over again with a childhood friend at their high school reunion. Now, she sees that being in love and feeling "normal" all start with the ability to love yourself and recognize that you deserve someone who loves you for you, HIV and all.

This interview was conducted in October 2012.

Inspiring stories of people living with HIV.

Can you start by talking a little bit about how you found out you were HIV positive, and what year it was?

I found out way back in 1987 that I was HIV positive. I was actually told I had ARC [AIDS-related complex] at the time. ARC should really now stand for "archaic term," because it got fizzled out a long time ago. But when I was diagnosed, I had swollen lymph nodes, and that was considered a symptom. But I didn't have any serious opportunistic infections, or things that would qualify as an AIDS diagnosis.

I got tested as part of a screening with a new physician to try to figure out why my lymph nodes had been swollen for two years. Actually, two years earlier, '85, I went through a conversion illness, where my lymph nodes became swollen. I had a rash all over, and chills, and a fever, and the whole thing. The doctor I was seeing at the time thought I might have Hodgkin's disease, a type of lymphoma; so I had three lymph nodes cut out and biopsied, sniffed out, looking for cancer. That was negative and so then there really wasn't any answer for why this happened to me.

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Two years later, I found out that I tested positive for Epstein-Barr virus, which is kind of like a chronic form of mono. And directly across the street from the other doctor was this Dr. Tilkian, who specialized in Epstein-Barr.

So I went to him. On the very first visit he said, "Why don't we rule out this possibility?" It was just a physical to find out what's going on. I never gave the test a second thought.

I'd actually started getting vitamin shots through their office (B12, magnesium and folic acid shots). I went back to get a shot two weeks later and that's when I was told. He told me that I had ARC.

What did you think and feel when you first heard that news?

It was surreal. It was very surreal. At the same time that I found out I was diagnosed, I was going to school. I was in college full-time. I was in a psychology class where we were actually studying HIV and AIDS in the class at that time. I remember sitting in the class and learning about what was going on, learning about this pandemic, and thinking how awful this is. And, thank goodness, it has nothing to do with me -- it's terrible, but I'm so glad I'm not part of that world.

"I remember sitting in the class and learning about what was going on, learning about this pandemic, and thinking how awful this is. And, thank goodness, it has nothing to do with me -- it's terrible, but I'm so glad I'm not part of that world. And then I found out I was part of that world."

And then I found out I was part of that world. One of my biggest concerns was, even before worrying about my own health, I was worried that I had infected my boyfriend, who had been living with me for a year, at that point.

A lot of my emotions went into the idea of: Did I infect this guy? I hope I did not infect him.

At the time, did you have a sense of how you might have become positive?

Oh, yeah. I know exactly how I was infected. What do they say? Denial is more than a river in Egypt. Yeah. I had a boyfriend who I met in 12th grade at an after-school job, working in a hospital. We worked in the dietary department. It turns out that he was shooting speed, crystal meth, and actually selling it, too. His sister was kind of higher up, and lived with a guy who cooked up the stuff.

In good ol' superficial Los Angeles, all this guy, Joe, had to say to me was, "Oh, I think you need to lose some weight." That was the way to get me sucked into the world of crystal -- crank -- because it is really all about looks. It's really hard; for a young person growing up there, it's very difficult.

As an older person, now, I don't let it get to me. But growing up there was hard. When somebody criticized my looks, because I didn't look like the ideal tall, thin, skinny, blond chick, it got to me.

So I was introduced to snorting speed, snorting crank, through this guy. Never shot it. But unbeknownst to me, he was shooting it. He kept it a secret. I found out by accident that he was shooting it. Actually, after like four years of being in a relationship with this guy, having unprotected sex with him, I found out that he was shooting it. But at the time I found out, I didn't know about AIDS. I was freaked out, but I didn't know anything about AIDS at the time.

Basically, it was having unprotected sex with an injection drug user.

Is this the partner that you were with when you tested positive?

No. The original partner that infected me: I had broken up with him, which was not easy. I remember kicking him out of my apartment, and him literally kicking me.

I started to go to school soon after that. I was working in an old-age home as an activity director. That's where I ended up meeting the son of a woman who worked there, and he moved in with me. At the time that I got tested, I had just started college -- this is like a year later. And he had been living with me that year. We were having unprotected sex, also.

So, different person. A guy who was actually calling me his soul mate. You know, we used the word soul mate. I know. I really saw what this guy was all about when I found out about the diagnosis. And it wasn't pretty.

Was he the first person that you told?

Yes. He was the first person. He was also going to school. He was going to UCLA at the time. Came home, and I told him right away. I was thinking, we should get a second opinion. We should get this test done again.

At that time, I think it was the Western blot and the ELISA test. If the first test was positive, they did the more accurate ELISA test -- which was, I think, pretty accurate. [Editor's note: In terms of HIV testing order and accuracy, it's actually the other way around.]

We went and I got tested again. I got tested and sure enough, I was positive. He wasn't infected. But for the next two years that I lived with this guy, he treated me like a leper every day. It was awful.

At the time, I wasn't empowered enough to kick his ass out. I was thinking it's not going to get any better than this. I don't want to have to be limited to a certain group of people that are not the people I normally would choose to date, you know? Closeted gay men, or injection drug users, or all these groups which were actually a lot more closely associated with HIV back in the early '80s, anyway.

I didn't want to be limited to that group. I thought, well, this guy is a complete jerk. He's treating me like a complete jerk. And not only are we not having any sex, he's not touching me; he's not using the same soap, or towels, or food, or anything. And he'd actually become more verbally and physically abusive. I put up with it for two years and then finally I found out he was screwing around with different women, and finally kicked him out. That was a glorious day.

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